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Thread: What Is Next For Jonathan?

  1. #61
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    ((((((Hugs to All)))))) ~

    Yesterday, Jonís nurse visited to change Jonís trache, catheter, and to examine his many wounds. Through it all, Jon was wonderful, patient, tolerant, and brave.

    One of his wounds is on the bottom of his scrotum. We are certain that it is from the continuous leaking from his catheter, which weíve been unable to solve. Iíve been applying Calazime paste and covering with an Optifoam pad. She switched to an anti-fungal powder and an Optifoam pad.

    Since sheís a new Grandma, she suggested I try a diaper rash remedy: Butt Paste. Yes, that is what it is called. I looked at her, I looked at Jonís wound, and looked at her again, ďAre you sure you donít mean ĎNut Pasteí?Ē

    I hope you laughed, because we all did.

    None of these supplies can be provided by the nursing agency, and I need a doctorís prescription for them to get them through Jonís medical supplier. So I just went to Amazon today and bought them. Theyíre all OTC. I also bought trache collars and wrist restraints.

    The nursing agency sent the wrong traches to us twice, and I had to call each time to try to get the right ones. I finally prevailed after the third call. I canít order them on line without a doctorís prescription.

    To calm the atmosphere, given all that we were doing to and for Jon, Jim put on a Julio Iglesias CD. When we were finished, Jonís nurse started dancing, then we all started dancing. She and her husband are taking a ballroom dancing class, and she danced over to Jim and said, ďDance with me, Jim.Ē

    She was teaching him the box step, and he was following, as best he could. Jon and I were dancing too, but we couldnít take our eyes off of Jim and Jonís nurse.

    Tears filled my eyes. She loves us so much, and she always calls Jim and Jon her ďfavorite guys.Ē She should be retiring, and they are working her into the ground, but she doesnít want to leave us. In fact, our area was redistricted, and she fought to keep Jon as her patient. New management is really messing with this fabulous nursing agency, and itís so disturbing.

    She said she was concerned that Jimís fatigue could be anemia, but she feels that his color is good. Weíll find out next week, when Jim sees Dr. K and has blood work. But, he definitely feels weak and wanting to sleep a lot. Iím thinking that maybe we should hold off on another Opdivo infusion for a couple more weeks, so that he can recalibrate his WBC and RBC.

    Meanwhile, Jon feels well today, and heís peeing like a race horse. So itís all systems go.

    Thank you all for your love, support and prayers for us. Know that we pray for you too, and send healing energy your way.

    Love & Light,



    Rose
    Mom to Jon, 48, (seizure disorder; Gtube; trache; colostomy; osteoporosis; hypothyroid; enlarged prostate; lymphedema, assorted mysteries) and Michael, 32, (intractable seizures; Gtube), who were born with an undiagnosed progressive neuromuscular disease and courageous spirits. Our Angel Michael received his wings in 2003 and now resides in Heaven. Our Angel Jon lives at home with me and Jim, the world's most wonderful Dad.

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  3. #62
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    Rose, What an uplifting story. There really are some very caring people out there in the medical world. So glad she is Jon's nurse. I can also vouch for the fact that music is a wonderful medicine for the heart body and soul. It's one thing that no matter how Kathleen felt it brought a smile to her face. She pretty much loves any and all music. So glad for a successful visit and the care that your whole family got.
    Mary Grace

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  5. #63
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    Aww! I love how the nurse danced with you! Sometimes when the immune system is really working hard it can cause fatigue so I wonder if that's a sign Opdivio is effective and not just anemia. Can Jim eat things with more iron in the meantime just in case?
    Mild Spastic Diplegia Cerebral Palsy and bad proprioception.
    My website for my original short films! http://cripvideoproductions.com/astrokeofendurance.php

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  7. #64
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    Mary Grace ~

    We've been truly blessed with wonderful nurses, and this nurse has been caring for Jon since 2009. She is a member of our family, and we love her so much, as she loves us. I honestly don't know how we would have survived without her all of these years.

    She and I laugh so much, when we chat on the phone, and when she visits. And sometimes, we cry a little too. She brings us avocados from her 40 year old tree (oh, are they fabulous!) and we give her oranges, which I order from a grove north of us (and oh, are they delicious!). We see her every month, so that's a lot of time that we've spent together.

    Jon adores her. As soon as she walks into his room, his arms are outstretched for a big hug. He doesn't flinch or struggle or try to grab her or our hands any more. He just relaxes knowing that she will care for him with tenderness and compassion.

    We always have music on for these visits. It does set the mood and gets us loose and talking, laughing, singing, and even dancing. We're doing quite a few medical procedures on Jonathan, but he doesn't mind, because he has our company and entertainment. And LOVE.

    I know Kathleen loves music and to dance! How is she feeling? What's the latest news on her foot? Please update. Sending healing prayers and thank you for your prayers for us.

    funnylegs4 ~

    Yes, you're so right about the immune system working overtime. Jim is also experiencing RA symptoms, and one of those is fatigue. Fatigue is listed as a side effect with Opdivo, so this is expected. It is rather intense for him, but he's able to rest and sleep as much as he needs to, so he does rebound, as he did tonight, after sleeping most of the day.

    As vegetarians, we do eat veggies, which have iron. Here's a list of the foods needed, and we eat all of them:

    https://www.healthdirect.gov.au/foods-high-in-iron

    Jim does need to cut down on his caffeine intake. He loves his espresso and tea. But he is also drinking a lot of water. And orange juice, freshly squeezed daily.

    We'll know more after he sees Dr. K on Monday.

    Thank you for your prayers, and know that our prayers are with you too.

    Love & Light,



    Rose
    Mom to Jon, 48, (seizure disorder; Gtube; trache; colostomy; osteoporosis; hypothyroid; enlarged prostate; lymphedema, assorted mysteries) and Michael, 32, (intractable seizures; Gtube), who were born with an undiagnosed progressive neuromuscular disease and courageous spirits. Our Angel Michael received his wings in 2003 and now resides in Heaven. Our Angel Jon lives at home with me and Jim, the world's most wonderful Dad.

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  9. #65
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    ((((((Hugs to All)))))) ~

    (I wrote this on Sunday night, but I was too tired to post it. Jon has so many ďowiesĒ now that it is just heartbreaking. Wounds: left buttock, coccyx, testicles, legs/feet. Yeast infection: groin, creases in his torso. And now this new one.)

    Evidently, Jon doesnít have enough problems. He needed one more.

    For the past 2 days, Jonís shirts (hospital gowns) have been soaking wet on the left side. We thought it might be his colostomy leaking, so we changed his flange, but the moisture continued. We carefully checked the crease between his deformed torso and his absent left hip. Very moist with sweat, but no evidence of leakage.

    Today, inspecting carefully using a flashlight, I discovered a pinpoint dot on the outside of his left thigh and spotted a drop of liquid emanating from it.

    Itís hard to believe that this tiny pore could produce the volume of fluid discharge that has soaked half of Jonís shirts. But it has.

    I cleaned it and covered it with an Optifoam pad, which seemed to contain the fluid fairly well, until it started to leak out under the adhesive. Now, Iím applying a 6Ēx 6Ē pad for a tiny dot, and changing it twice a day.

    I searched the internet and found what is likely the cause of the leaking ~ lymphorrhea.

    http://www.lymphedemapeople.com/thes...ymphorrhea.htm

    This is the first time I had a name for the weeping, which has occurred on Jonís feet and calves. His skin is very dry and crusty. Weíve found that applying moisturizer makes it worse. Removing the crust disturbs the skin and causes more weeping.

    We stopped using compression stockings and bandages, because that just pushed the fluid up into Jonís torso, which resulted in compromised lung function and accelerated heart rate. And gagging and vomiting.

    But this tiny pore is not crusting. Itís just gushing.

    I emailed Jonís nurse, who will visit Friday to change Jonís catheter. I also emailed our PCP to request an authorization for a visit by Jonís lymphedema PT. We need to conquer this, before it becomes a crisis.

    So Ö this is what is next for Jonathan.

    Big Sigh.

    Love & Light,



    Rose
    Mom to Jon, 48, (seizure disorder; Gtube; trache; colostomy; osteoporosis; hypothyroid; enlarged prostate; lymphedema, assorted mysteries) and Michael, 32, (intractable seizures; Gtube), who were born with an undiagnosed progressive neuromuscular disease and courageous spirits. Our Angel Michael received his wings in 2003 and now resides in Heaven. Our Angel Jon lives at home with me and Jim, the world's most wonderful Dad.

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  11. #66
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    It's always something. I believe you will conquer it, Rose.

    Prayers coming your way,
    ANN
    There comes a time when silence is betrayal.- MLK

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  13. #67
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    Prayers are always being said for Jim, you and Jon. I keep praying that Jon will have some good days. No one deserves them more.
    Virginia

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    Rose, so sorry to read about this. My mom had something very similar with her edema due to congestive heart failure. Her sock and shoe were just soaked in fluid.

    Do you have any maxi pads handy? Those are soft and would be good for absorbing the fluid. At this point you just want it to flow out and the area stay clean until the hole seals. Get the super absorbent kind so you won't have to change them as often, and keep a count of soaked pads so you can inform the nurse, etc.

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    Oh Rose I"m so sorry! AS if there's not enough going on. I pray that you get some answers and Jon gets relief. Keep us posted!
    Mary Grace

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    ((((((Hugs to All)))))) ~

    Thank you ANN, Virginia, callyflower, and Mary Grace for your support.

    callyflower ~

    I'm so sorry that your mother had to endure that, and I imagine it was quite uncomfortable for her. Did she have lymphedema as a result of congestive heart failure? It's just a nightmare to combat lymphedema. When Jim saw our pulmo doc in Jan. '17, and he told the doc that Jon had lymphedema, the doc empathized and said, "You'll be chasing that forever. I'm so sorry."

    Jon's nurse said that she can get some absorbent pads for Jon, which are used in controlling lymphorrhea. The Optifoam pads have a gentle adhesive, easy to apply and remove. Jon's skin is sensitive to tape, so we are reluctant to use anything that doesn't have appropriate adhesive. His colostomy flanges drive him nuts, and he scratches at them until he pulls them off and is excoriated around his stoma.

    Last night, I bemoaned to Jim that we should just get one giant Optifoam pad and wrap him up in it. There just are no easy solutions.

    To add to all of this, I am gathering information to create a Special Needs Trust for Jonathan, should Jim and I die before he does. It's complicated, and the more I delve into it, the less I feel like I know. I need to spend time studying everything, planning, and identifying people, who can execute the will and trust.

    This, as you can imagine, is very hard on me emotionally. Jim and I struggle with the issue of praying that we outlive Jon, because no one will be able to care for him as we do, and he will grieve for us terribly. But, of course, we don't want to lose Jonathan. He's our everything, as is Michael.

    While this is ripping me to shreds, it must be done, because we HAVE to have a plan for Jonathan. And before we call an attorney, I want to have that plan in place.

    Meet me here ~



    Your smoothies await you~



    Love & Light,



    Rose
    Mom to Jon, 48, (seizure disorder; Gtube; trache; colostomy; osteoporosis; hypothyroid; enlarged prostate; lymphedema, assorted mysteries) and Michael, 32, (intractable seizures; Gtube), who were born with an undiagnosed progressive neuromuscular disease and courageous spirits. Our Angel Michael received his wings in 2003 and now resides in Heaven. Our Angel Jon lives at home with me and Jim, the world's most wonderful Dad.

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